If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.
FND
Tracybuchanan
Member Posts: 2 Listener
Hi ,I was diagnosed with FND a year ago.I have mobility issues,fatique,arm ,shoulder, neck pain,tremors ,hallucinations,noise intolerance .I am 49,married to a fabulous man and have 2 boys and a dog.glad to be part of this group.any one else have FND?
Replies
I ran quick searches in Scope on FND and Functional Neurological Disorder and, to be honest, did not find very much that was specific to it. That, however, does not prove a lot, and there may well be other sufferers whose posts and conversations haven't highlighted FND in their headings. I'm sure that many of the resources here could prove to be of use to you - about benefits, for example, and dealing with chronic pain. You should find a series of links in the purple band lower down your page.
I had a quick look off-site, too, and found http://www.fndaction.org.uk/facebook-support-groups/ which, if you haven't encountered it already, might be of use to you.
So I hope you'll have a look around and tell us a little more about you and your circumstances so that we can look for ways to help and support you. Others will be along to greet you who may know much more than I do
Warmest best wishes,
Richard
Welcome to the community @Tracybuchanan, it's great to have you here!
You can have a look at our groups and discussions to see which you would like to get involved with, whether it be to ask for some help and support, or just to chat with other members of our community.
i was diagnosed with FND a month ago. previous to that in april i was
diagnosed with degenerative disc disease with bulging discs c2 to c7. every time i went to gp he gave me painkillers. i too have tremors, involuntary shakes and spasms, my headaches, neck pain, shoulder pain, back pain, ear pain, short term memory loss, confusion and my arms and legs not working properly, my speech issues....i asked my partner if im going crazy. i was taken into hospital due to severe neck pain and agonising pressure in the head. it was only then did drs actually see what i was having to live like. mri and ct scan showed everything in head ok. after months of waiting i saw a neurologist who diagnosed FND. so i was relieved i wasnt dying or going crazy.
FND is a specialist subject sO only medical staff who know about FND should help. im going to start FND physio soon and am on a waiting list for seeing neuropyschologist . FND is when the brain sends and receives messages but doesnt react correctly. all the symptoms are REAL. i had physio sorted but the neurolost cancelled it as FND needs different physio as ordinary treatment could make the problems worse. i will see a neurophyschologist to retrain my brain to think different and hopefully in time i will get better. since march 4th i have been this way and i now use wheelchair to go out with partner pushing me and in the home i have zimmer, comode, shower stool which is a godsend. both bladder and bowel are incontinant since this started and i get exhausted after 5 metres of walking. as soon as i stand im on a rocky boat and even when i sit this happens virtually every day. i cant cook because i have little strength in arms and hands and cant judge distance when going to pick something up. the neurologist aked me what i hope will happen with treatment. i said....as long as i can walk and speak again and stop the depression setting in then that would be great. yep, the tears and the cant do anything mood has set in and im sad a lot cos i feel ive been put to the back of the queue with nhs and ive had to fight every bit of the way to get anything done. im now struggling with sugar levels and my diabetic nurse has told me i must see a specialist now as since having FND my fasting level has gone from 50 to 90 and she says its not what i eat but because im not active now.
im off morphine and diazapan as they didnt help me anyway but whats annoying is the neurologist told us that i should up my other meds to a really high dose and would write to tell my gp. my gp hasnt received the letter concerning my meds . on top of that pain management told me to double morphine intake at my initial appointment but didnt write to my gp or myself to say. so we did that on his advice. im concerned that the specialists dont talk to each other or communicate well as im told one thing then another. but now im diagnosed.....i only do what the neurologist says as he seems to be the only one who understands me and knows what im going thru is real.
i know ive gone on a bit about my own FND but having gone and still going thru so much, i feel reading about my experience might just help you even a little. FND isnt something many gps are aware of and therefore try to treat symptoms which could be a number of other ilnedses. i had to beg and beg for people to listen and i fell on deaf ears. tc
Im at the moment seeing a psychologist to help with understanding and dealing with the symptoms. I have involuntary body movements and sometimes cannot speak properly.
I've been going to the neurologist for ten years for peripheral vision loss (nothing wrong with my eyes), facial spasms and a big list of other symptoms that come and go. I was so scared this was the start of Parkinson's so I'm very relieved to be told its FND. They still want to do a lumber puncture and MRA and I suppose I should go along with that. I have though, been researching FND and this sounds very much like me, though I'm nothing like as poorly as some of you.
Look forward to reading the forums.
i am looking to see if there is any other help that he can get as I am unsure where to go with it as the doctors don’t seem to understand the condition x
Have you ever looked at FND Hope? They are a charity which explain FND really well and you may find useful.
I know what you mean about the doctors not knowing much about FND. I've been passed from specialist to specialist and it's taken almost 9 years for me to be diagnosed. It was while I was in hospital having an operation for trigeminal neuralgia that I met a fellow patient who had seen the health problems I had and suggested that I may have FND. She'd been in hospital with it for 12 months! Luckily I live in an area where there is a consultant with an interest in it. Chloe suggested looking for FND hope. There is a closed Facebook group run by fndhope. I use it and can recommend it. I know there are some there who are dealing with loved ones with FND. I'm sure you will find support and advice. It does seem like a bit of a postcode lottery as to what treatment is available. Take care and if I can help please don't hesitate to shout. xxx
Unfortunately I do not have experience of this, but I hope other members will be able to share their stories.
FND Hope might be a website that can help, they have all sorts of information and support groups.
I have just come across this post.
I have written a blog post on FND if you are interested or it is helpful:
https://hannahdeakin.blogspot.com/2019/08/what-is-fnd.html
I also had a stay at the Wolfson unit where they treat FND as well as other neurological conditions:
https://hannahdeakin.blogspot.com/2019/07/my-stay-at-wolfson-unit.html
Best wishes,
Hannah 😊
last night I watched a catch up of a BBC2 programme... Hospital.
The Walton Centre Liverpool was featured.
I was in there in December where I finally got diagnosed with Spinal PPMS, after 22 years of being given the runaround.
My point is that 3 people with FND were featured. Oh my word! I had heard of it but didn't know much about it till last night.
What a complicated and very cruel condition.
A neuro professor had given specialised physio to a man featured and what a difference it made for him...but very sadly, there was no more money for the trial to continue.
I am so sorry for those of you affected by FND and wish you all the best and hope you find effective treatment.
Pollyxx
I was diagnosed with FND over 5 years ago now. I'm now 35, I have many symptoms with FND but my main one is that I am unable to speak properly and my partner and mum have to handle my phone calls and because I suffer with social anxiety also, one of them have to come with me if I ever need to go oppinment ect.
It has been a very hard 5 years and only just coming round to the diagnosis. It dose take a long time in finding doctors specialist to understand it is real and not just in your head. From the time Iwas diagnosed, I lost my 8 year job, they had to let me go beacuse nothing more I could do, I can no longer work as a hairdresser either and we sadly lost our flat due to this and other illnesses I have also been diagnosed with.
I'm positive part to this is that. Yes times are going to be hard and you will certainly find out who your real friends/family are. Try not to let things get to you, you will have bad days but good days are just around the corner.
I found for me is to do things on a traffic light strategy. Stop when you feel you need a rest, don't burn yourself out thinking you need to get it all done right then.
It's ok to have bad days just try and think of positive things, even if can only think of one thing in a day. Always end day on a positive.
Know that your not alone and if you every needs chat or a moan. Someone is always about to listen.
I wish you all the best in getting the answers you need and I'm sure people on here will ha e loads of advice and people to turn to for help if needed.
I feel extremely relieved and happy that I finally have a label and know where I belong! I felt lost all those years.
After so long I cope as best as I can. I do have a really good support system and a great hubby of 48 years!
I remember you posting how good the Wolfson unit is. I`m glad they helped you.
Tae care xxxxx
I've been diagnosed 3 plus years ago and I have many days where its too overwhelming. I'm in wheelchair, confused, hronic exhaustiondissociated, weakness on my right side, incontinence, tremors etc etc. Its never ending. I'm on fndhope site which helps us understand fnd and others give their stories and listen when it gets too much for us.
Relaxing and pacing helps although I'm one of those people who does too much in one go, still can't fet pacing right. Ifbi don't pace myself I'm left happy that I've managed to fo whatever I was doing but chronically exhausted and suffering for days after. Having a good support at home is needed. Fnd can look fake but it's definitely real.
Pace yourself and if needing a break, go into quiet place and maybe nap. Distract yourself if you can by ignoring what the brain is making you fo and if you use distraction it can work.i have NEAD too none epeleptic seizures which are triggered by lights, noise etc. Do you have these too?
have you been offered any help for your fnd? there's not really anything available in my area but i think it depends where you live. do you have friends/family/carers who are able to help you when you need?
I've got vertigo symptoms big yime, can't bend down, can't look up the list is endless.
But I have a friend who my old school friend put me in touch with as she also has fnd and was struggling. Its nice that we can text and support each other.you can too if you'd like.
The main thing is to pace. I try but I've always done things as they need done rather than leave it. but then i find myself whooshing , my head feeling like its going to fall off and depend next four hours exhausted. I dont have anyone else andcrely on my fella and my son so much. My speech is horrendous. It's more of a guessing game and random things come out that make no sense or fit in with the context of the conversation at that time. It's hard, it's frustrating and awful to point id not wish it on my worst enemy. I'm just thankful that I've got good support from son and my partner. There's no help out there and no hope really. A postcode lottery in UK.
You want yo personal message me thsts fine. Its good to know you're not salone suffering. Believe me, there's been times I've thought I dont want to be here. I've thought of ways yo do it but I'd be hurting those I love and I could never do that.
You asked how long. Ironing back I've had symptoms come n go for years and Dr's couldn't find the cause.but three plus years ago it just reared it's head full time and I'm crippled with its symptoms. I dldo have NEAD which is non epileptic seizures.
Many of the symptoms look fake. How can you be fine one minute and not the next but we who have fnd know that it's not fake,,,,its definitely real!
I'm from the North east. I was going through a period of total hell with fnd and neck issues and my Dr's hadn't even heard of fnd so offered no help at all. I was in such a state with chronic pain and the whole load of serious symptoms that I wrote to a neurology dept in Sheffield just begging someone to listen as I was desperate. I never expected a reply but I did. The neuro said I should show my then gp his reply. He said I should be considered for in patient treatment as in his opinion I needed it. My gp came back with we dont have the funds. Theres 1000s of us suffering.its not just those with fnd,,,,,,its the partners and children who suffer too. If we can't get our heads around it then how can they understand it?
You need to tell your family. dont go through this alone. If people don't accept fnd then their choice not to be involved but they need to stay away. The stress of anything exaggerates the symptoms and it doesnt get easier for most of us although apparently if you get the help in first six months you can maybe get bits of normality back.
Just remember that there's already two of us on this site with fnd and I for one am there if you need to talk or ask for advice. Our bodies are different, our symptoms maybe similar or different in levels, frequency of symptoms and amount. Just because I get high level of pain, chronic exhaustion memory loss and NEAD etc doesnt mean you will. I've got 20 plus symptoms most are there 24/7 and rarely get any relief from them. I cope. I cope because I've got two people who've understood me from day 1.
Need to vent, vent.
Need to cry, cry.
Don't wear a smile to cover your pain, let it out. Stress is a huge factor and trying to get through it alone just creates a lot more inner stress that fnd brain twists and twists until it comes out as a symptom. I'm sure your family will understand and give you the support you need. However, ask yourself how you would feel if shoe was on the other foot and you were left in the dark about it.
My son just said today that he never realised how bad I was. He said he knew I had a lot of bad symptoms but he didn't know to what extent and how much they affect me until he came to live with us. Luckily we can laugh together about all the mistakes I do. Find a hobby you can do. I dont have strength in limbs and with right side weakness its hard to knit or paint or do much at all for me. I love jigsaws and writing, reading books but unfortunately I can't do. Either memory, concentration or weakness has taken all those hobbies away from me.ive no concentration anymore. TV I can watch emmerdale or corrie but I have no interest in anything else. Films,,,,,due to my memory I could have watched a film 10 times in the past but would not remember doing so. It leads for a very interesting life lol.
Not like i'm good at much but u mentioned painting & i guess i do like to draw so i'l take that up again not dont it since having my kids or maybe colouring eventho i'l feel like a kid again but ways of just passing the time & not getting board
..
Just looking for any tips or advice? Feel like my body is double my age and worried I’m going to just get worse and worse
Scope community team
Want to give us feedback? Complete our feedback form now.